BLOOD & DATA: ETHICAL, LEGAL AND SOCIAL ASPECTS OF HUMAN GENETIC DATABASES

• Other Authors: ?rnason, Gardar, Nordal, Salv�r, ?rnason, Vilhj�lmur
• Language: English
• Published: 2004
• Subjects: Blood; Databases; Genetic Databases; Bioethics; Value / Quality of Life; Social Control of Science and Technology; Sociology of Health Care; Confidentiality; Genetics; Molecular Biology and Microbiology; Genetic Screening / Genetic Testing; Eugenics; Genome Mapping; Genetics and Human Ancestry; Donation / Procurement of Organs and Tissues; International and Political Dimensions of Biology and Medicine; Information Science Ethics; Government Ethics; Research on Special Populations; Economics of Health Care; Iceland
• Online Access: http://hdl.handle.net/10822/547694

List of Contributors -- Preface -- Pt. I. Bioethics, biotechnology, biosociality -- Ch. 1. Microfluidic platforms, genetic databases, and biosociality / Michael D. Mehta and Jennifer D. Poudrier -- Ch. 2. Privacy, property, and social relations in bioinformatics research / Anne Gatensby -- Ch. 3. "Interbreeding within the Icelandic population is high compared with that of mice or fruit-flies" / Gardar Árnason -- Pt. II. Genetics in Asia -- Ch. 4. Socio-genetic marginalization in Asia: a plea for a comparative approach to the relationship between genomics, governance, and social-genetic identity / Margaret Sleeboom -- Ch. 5. A study on the ethical, legal, and social aspects of the Chinese genetic database in Taiwan / Wan-Chiung Cheng and Wan-Ping Li -- Ch. 6. The Singapore human polymorphism/mutation database: our experience with setting up a country-specific database / Ene-Choo Tan and Marie Loh -- Pt. III. Consent in medical research -- Ch. 7. The controversy on consent in the Icelandic database case and narrow bioethics / Sigrídur Thorgeirsdóttir -- Ch. 8. Toward a tiered approach to consent in biomedical research / Peter Lucas -- Ch. 9. The wolf in sheep s clothing: informed consent forms as commercial contracts / Gerard Porter -- Ch. 10. Gift or duty? A normative discussion for participation in human genetic databases research / Nadja K. Kanellopoulou -- Pt. IV. Consent, biobanks, and genetic databases -- Ch. 11. Broad consent the only option for population genetic databases? / Jane Kaye -- Ch. 12. Databases and informed consent: can broad consent legitimate research? / Sigurdur Kristinsson -- Ch. 13. What is wrong with using anonymized data and tissue for research purposes? / Ants Nomper -- Ch. 14. Informed consent for donating biosamples in medical research -- legal requirements in Iceland / Hördur Helgi Helgason -- Ch. 15. Why we should not relax ethical rules in the age of genetics / Tuija Takala -- Pt. V. The public discourse on genetics and databases -- Ch. 16. Long-term trends in public sensitivities ...